Montgomery

Otto Bock Kimba

Owen is doing well and has kept us busy the past few weeks.  We have started the process of fitting him for a wheelchair.  The past two Wednesdays, I have been lucky enough to have vendors out to our house with Owen's physical therapist to try out two different chairs.  We are choosing between the Snugseat Stingray and the Otto Bock Kimba.  If anyone who reads this blog is familiar with either one, I would love to hear some feedback! The good news is Owen looks great in both.  We need to decide which one will best fit with our family. This is a good problem and we are very excited!

Snugseat Stingray

Owen had his routine follow up with his neurologist at the end of January.  He was struggling with a cold at the time so it was great to have Karen's eyes on him during the appointment to be sure he was fine.  Fortunately, it remained just a chest cold. With some back pounding and nebulizer treatments, most of the congestion has been cleared. We basically are treading water until the genetic testing is back in April.  Hopeful for answers to our mystery man.  Until then we continue to let Owen steer the ship on this journey.

I titled this blog post, Montgomery, because this is the name of a beautiful little boy who lost his battle with Metachromatic Leukodystrophy on Sunday night.  Gummy and his mom, Cindy, were two of the first people I met after Owen was diagnosed in 2011.  Cindy reached out to me through this blog and facebook. She has provided me with resources, support, and a glimpse into her life. She also writes a blog, mymldface.blogspot.com, for anyone who would like to know more about her family's journey with leukodystrophy.

I have taken Gummy's passing very hard and I know it is because he is a glimpse into the future and a reminder of the journey we are on with Owen. My little guy is doing so well right now and I am so in love with him. I just cannot believe that one day too soon he is going to be taken away from me.  Gummy had a beautiful life filled with a loving family, but his disease was terrible.  It is painful and it stole from him daily. I know he is in Heaven running and playing with his friends and being joyously pain-free.  He was released from the awfulness of his disease, but he has left behind many people who love and miss him.

Gummy always wore great shirts with powerful messages.  In honor of him, Owen is wearing his best t-shirts this week.  Cindy has inspired me to help Owen find his voice like Gummy did.  Fly high sweet Gummy!